Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.

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Thursday, December 16, 2010

Sending Christmas cards isn't as easy as it seems

Not only is my own Christmas a bit crazy (see below), I try to spread my craziness everywhere. Robert has lived in The Home for about a year and a half and he already has a supply of holiday decorations. We decorate his room with a tabletop, pre-lit tree (with unbreakable ornaments, of course) and a few knick-knacks to set around his room as well as all of the Christmas themed arts and crafts projects he makes. This year, we added a happy, rotund snowman cut-out to his front door which will make anyone smile as they pass by.

Robert also sends out Christmas cards. Last year, he only did a few but this year I started him early and gave him a lot of time to complete them. I finally figured out Robert likes to give cards (birthday, holiday, happy new year, whatever), with a religious theme so I brought over a couple of boxes of cards to let him choose which ones to send out this year. (um, I do realize Christmas is not all about the decorations, thank you very much). He was very pleased with the selection. I put address labels on each envelope and slipped a card into the inside flap of the envelope so it would be very easy for Robert to see who the card was going to. He told me he likes to write a personal greeting and then sign the card. He told me everything he was going to say. Crap. This will take weeks. I should have started him on Halloween.
I showed Robert the list of people he was sending cards to and asked him if he could read their names. "Yes." Okay, good. Do you know who everyone is? "They're all relatives." Close enough.

I told Robert he would have plenty of time to sign the cards and I would mail them when he was all finished. I was a little concerned about time so called him everyday to see how he was coming with them.

During one of these check up calls, Robert told me our nephew, Nick's, card was missing. Missing? How is that possible? I left the cards neatly stacked on Robert's table, even pointing out to him the cards to the nieces and nephews. Well, who knows what happened to it so I told him to do the others and I'll print out another label for Nick. I asked him how it was going with the cards other than that and he said he wasn't quite done. No problem, hon. We have plenty of time. (I'm starting to panic a little but, hey, people like to get a little Christmas cheer on Valentine's day, right?).

The next day, Robert called to tell me that two other cards were missing. Oh goodness. What is going on over there? Maybe the snowman is swiping the Christmas cards.

The next morning, I visited Robert to play cards and check on his Christmas card situation. I brought Robert a hot chocolate as a little treat.

When I arrived, Robert was brushing his teeth so I had time to look through the Christmas cards before we played a game of cards. Some were done. And sealed. Oooh. I wish he hadn't done that. I wonder if he put a couple of cards in one envelope and that's why he's suddenly missing some cards. The rest are all in a stack, tucked neatly into the inside flap of the envelope. I started to go through those and realized Nick's just got "out of order" so it wasn't near the card to his mom & dad or sister. That makes sense. Robert saw the card to Rich and Liz and the card to Jessica and expected to see the card for Nick. (They were originally all together but somehow got shuffled up). I told Robert I found Nick's card. "Oh?? Where was it?" Just mixed in near the bottom, hon. No problem. I placed it back near Rich's card.

Robert came out of the bathroom and I offered him the hot chocolate which I had set on the table. He wanted to go to watch the movie The Home was showing so that was my cue he was kicking me out. He then turned to move one of his chairs from the table and tripped over his feet, knocking into the table and falling to the floor. I saw this unfold in slow motion and all I could see was hot chocolate spilling over all of the Christmas cards! Now, I'm not a terrible sister and I assure you my first instinct when Robert falls is to save Robert. However. There was a lot invested in these dang cards so the only thing I was concerned about was saving the cards. I lunged at the table, just in time to pick up the hot chocolate as soon as it tipped over and moved the cards to the other side of the table (yes, this was in one motion).

Robert lay in a heap at my feet. Once the Christmas cards were saved (well, okay, some got a teensy bit of chocolate on them), then I pulled Robert to his feet. Hopefully, he didn't notice he was my second priority.

Robert was fine, the cards were fine (most of them anyway) and the hot chocolate was tossed for being such a hazard.

So, if you get a Christmas card from Robert, please excuse the chocolate. And the very real possibility that the name on the inside of the card that Robert wrote isn't the same as the one on the envelope. And that you may have more than one stuffed into an envelope. And that Valentine's Day may be just a few days away. Just know they were sent with love!

Books for the Caregiver

365 Caregiving Tips: Practical Tips From Everyday Caregivers

Forever a Caregiver, by Trish Hughes Kreis

Tell Your Story

Do you want to tell your caregiving or epilepsy story? I would love to talk to you! Email me at robertssister@att.net and I will publish an interview with you. Telling our own story helps others while also helping ourselves. I look forward to hearing from you! Trish

About Me

Trish Hughes Kreis works as a full-time Legal Administrator and is a freelance writer, blogger and videographer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for four years and they do their best to keep him happy, healthy and, well, excellent.

Trish is an advocate for more research on the long-term effects of uncontrolled epilepsy as well as an advocate for expanding the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act.

Trish also does her best to navigate the maze of social services and government programs available to help Robert and keeps him entertained with an endless supply of word search puzzles and game shows.

Trish contributes articles and videos to the Assisted Living Directory and has written for Caring.com, The Intentional Caregiver, Today's Caregiver and the EmblemHealth “What Care Feels Like” microsite. Trish is a co-author and publisher of the "365 Caregiving Tips" book series written with four other experienced caregivers with the hope it helps other caregivers navigate the world of caregiving. Daily tips are posted on the 365CaregivingTips.com website.